First off Jada's Labs:
Her white blood cell count was up: GOOD
Her Platelet count was up: GOOD
Her Liver numbers were down: GOOD
We don't yet know her prograf level (immune suppressant)
We don't yet know her EBV level
Jada's Spleen was a bit enlarged: Not good
Jada still has a persistent rash throughout the day: Not Good
Her Tonsils are HUGE! Not Good
Basically Dr Book said that although we hope Jada would not contract EBV, it is something that would have eventually happened. It is possible that her new Liver had some EBV in it that was dormant until now. Its possible she caught it from one of us. Dr. Book said that pretty much everyone has or will get EBV throughout their lives. But your body will identify it and keep it at a relatively dormant level.
Dr. Book said many of her symptoms are indicative of EBV in transplant patients. We are to watch for any lumps or lesions. If EBV gets out of control it will cause a very nasty cancer. EBV can live in the tonsils. Therefore Jada is being scheduled to have her tonsils removed in the next two weeks. Also as a precautionary measure Jada will be undergoing several ct scans on her body to make sure her there are no Lymph irregularities.
Although this is not favorable for Jada as a whole, Andrea and I felt MUCH better coming out of the doctors office yesterday. The Liver Team at PCMC is FANTASTIC. We completely trust their opinion and judgment regarding Jada Rose. Dr. Linda Book is a miracle worker and frankly it is a treat just to hear her speak about pediatric gastrointestinal topics. She looked us both in our eyes and said "guys I know that you are nervous, but I'm not nervous yet. We knew this would eventually be an issue. And you know me well enough that if I were nervous, I would tell you." That was very comforting for us to hear.
Shannon was one of the nurses who informed Andrea that we were getting a liver transplant two years ago. She was working yesterday. We love her! She has been such a help to us as her own son who is now a healthy young man has BA and subsequently a liver transplant. Whenever we have something new happen with Jada we always ask Shannon "so did you go through this with your son?" Invariably that answer is always "YES!" then she tells us how it was for her, and how she got through it. VERY helpful! So obviously we turned to her yesterday and said "So Shannon did you deal with this?" She got that "you better believe it" look on her face and said " YES WE DID!"And it turned out fine. Thanks Shannon WE LOVE YOU!
We will update as soon as we find out the dates for the CT scans and Tonsillectomy.
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3 comments:
Sounds like you have a great doctor and that is the best thing to have on your side right now. We are praying that everything goes well with the surgery and that this issue gets under control soon! The McF's
I am so sorry to hear you have another hurdle to face!! when will it end??? You have been through so much! I am so thankful for good doctors and nurses! What a blessing! We will have you guys and Sweet Jada Rose in our prayers! We will be praying that surgery goes well and that she can fight this crazy thing! I will be praying that her EBV level goes down! Keep hanging in there!
Speaking of miracle workers, hasn't Jada Roase already defied all odds with her life so far? She's definitely working with more than a normal person, so we have every reason to think she'll keep doing it!
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